Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

October 10, 2015

Saturday, October 10, 2015Tonight's picture was taken on October 6, 2008. Mattie was three months into his treatment, and managing fairly well before any of his surgeries. For the entire month of October, Mattie worked on designing and creating his own haunted house. A house made out of a plain cardboard packing box. The hospital understood Mattie well, and saved boxes for him, because they knew he loved to transform them. Mattie's haunted house was dressed to spook you from the inside out! As you can see, he even designed a witch with the help of Jenny, his art therapist.

Quote of the day: The utmost form of respect is to give sincerely of your presence. ~ Mollie Marti

It seems to be cricket season. This fellow was inside our front hallway a few days ago, until we relocated him back outside. This morning, he was sitting on top of our hibiscus plant. He blended in beautifully, but Peter spotted him. Mattie would have gotten a big kick out of this, since he was into all sorts of bugs.

Six years ago today, was Mattie's memorial service. It is hard to believe that all this time has past, and yet it seems to fresh to us. This afternoon, we drove to Mattie's tree to check on it and water it. The leaves are beginning to change on the tree and with the crispness of the air, it is very clear that we are into Fall.

I received an article from a friend today, entitled "Ringling Bros. Center for Elephant Conservation is working toward a world with more elephants and less cancer." I honestly had no idea what elephants and childhood cancer had to do with each other. But I found out!I learned that Ringling Bros. is not just about the circus! They are funding innovative research for childhood cancer as well as helping to meet the psychosocial needs of children who are hospitalized by bringing the circus to them! Elephants rarely get cancer and Dr. Schiffman (a childhood cancer survivor and oncologist at Huntsman Cancer Institute, UT) wanted to know why! The link below is a wonderful article on Ringling Bros., which includes the JAMA (Journal of the American Medical Association) publication on the scientific research, and videos that help to explain Dr. Schiffman's work in a simple and easy to understand manner. It turns out elephants have more of a protective protein (P56) than humans, and it is this protein which can either repair or kill cancer cells within the body. By studying the Ringling Bros. elephants, Dr. Schiffman is hoping to translate his findings to eventually help children with cancer. Ringling Bros. Center for Elephant Conservation is working toward a world with more elephants and less cancer:https://www.ringlingelephantcenter.com/cancer-research/

October 9, 2015

Friday, October 9, 2015Tonight's picture was taken on October 20, 2008. It was an unGodly hour of the morning as we waited in the pre-op area with Mattie before his first limb salvaging surgery. I will never forget that day because it was there that I first met the doctor who was going to oversee his pain management. Typically I love anesthesiologists, but this doctor and I did not see eye to eye from the moment we met one another. We disagreed before his surgery about Mattie's post-operation pain management and after the surgery was over, it was like World War III. She refused to give Mattie a pain pump, something that his surgeon requested and highly recommended. She did not want to give Mattie this pump because she knew I would press the button for him, instead of Mattie doing it himself. Needless to say, following her plan, Mattie was in horrific pain. Until I finally exploded and our attending HEM/ONC physician backed me up and we overrode the anesthesiologist's orders.

Quote of the day: If you put out acceptance and warmth, you tend to attract the same. ~ Deborah Day

I had a six hour long licensure board meeting today. For the first two hours of the meeting, I presided over an ethical violations hearing. I can't talk about the case, but after it was over my fellow board members said that I have the patience of a saint. In fact my tone and listening to a very frustrated individual in front of us, seemed to de-escalate the situation. I took these as high compliments because it was not an easy case to preside over! But given the day that I had, Deborah Day's quote resonates with me. Certainly if someone before you in aggravated and animated, the likely and natural response is to mirror this. However, I have found that listening and understanding why someone is angry and upset, almost diffuses the tension. When someone is upset they want to be heard, they want to get their side of the story understood, and fighting back or raising my voice serves no purpose. In a way, I may know this from clinical training, but to be honest Mattie was my best teacher. Mattie, pre-cancer, would have incredible tantrums at a toddler. Several a day, and those that would send you to your bed in need of rest kind of tantrums. When a child has such a tantrum, it is easy to get flustered and raise your voice. But I found that only made matters worse. What helped was staying calm, consistent, and to listen to what his tantrum was telling me. I can guarantee you that this strategy, once I learned it, worked 100% of the time. With that in mind, I apply this technique to all subsequent challenging interpersonal interactions I face.

The two pieces of art that I am posting tonight were created by Mattie. Recently I shared them at a conference with others, and thought you may want to see them too. This bright red one clearly was illustrating Mattie's feelings about being in the hospital and undergoing chemotherapy. He was desperate to try to escape pain (the red). He tried riding a bicycle, walking, running, climbing, and floating in the air to escape. As you can see the word HELP! was written to capture his sentiments.

However, depending upon Mattie's mood and what was going on, his art would change. Here you see his fall theme with leaves. However, you may notice this brown creature with legs near the base of the tree. This unfortunately is NOT a dog! Rather it was a large roach! As my faithful readers know, Mattie was fascinated by roaches. Not because he was familiar with them, but because he knew they freaked me out. Therefore, he loved to see my reaction anytime he mentioned, drew, or painted roaches.

October 8, 2015

Thursday, October 8, 2015Tonight's creation was created today by Tim Beck. Our FB friend! Tim made an announcement on his Facebook page asking parents if we wanted his latest creation, to then send him nine photos! Picking photos of Mattie for me is easy! I have a folder with ALL of my favorites throughout the seven years he was with us. These are the nine that I selected and Tim then cropped them and put them in a composition that made artistic sense. This was another wonderful gift we received today! As I told Tim.... he helps us keep Mattie's memory alive!Quote of the day: When we know ourselves to be connected to all others, acting compassionately is simply the natural thing to do. ~Rachel Naomi Remen

Today was one of those days in which all sorts of surprises came my way! My greatest surprises are not tangible things! I prefer the intangible ones.... stories, connections, etc! The first one was I received an email from Body Dynamics. They are a physical therapy business in Falls Church, VA. Last year, Body Dynamics collected candy for our annual candy drive (as the photo illustrates), which stocks our free snack cart at MedStar Georgetown University Hospital. Body Dynamics contacted me because they want to continue the tradition this year. They also want to participate in our April item drive.

The second surprise was one of our good friends and supporters, sent me a grant application to his company to apply for a corporate sponsorship for Walk 2016. These kind of leads are like gold to me. Corporate sponsorships don't just happen and they certainly do not happen without leads and connections. Which is why I view this is a wonderful surprise today.

The third surprise was from another friend. This friend, like so many people, doesn't like going to the dentist. However, she wanted me to know that after reading the blog and our Facebook page about Fairlington Dental and their support of the Foundation, that she decided to take a leap of faith and call them. Any case, she loved their nurturing phone presence and what she heard about how they care for their patients. They asked her how she found out about their office, and of course the answer was.... Mattie Miracle! So I wrote to Fairlington Dental today and told them that candy has connected us and our communities together!

While going through Facebook today, I noticed that my friend in cancer posted an article entitled, Six Things I've Learned in a Pediatric Oncology Waiting Room. When I first read the article I wasn't sure what direction the author was taking, because her words sounded so positive and uplifting to be in a pediatric oncology waiting room. However, as I kept reading, she clearly made her point.... it isn't about the wait. While waiting hours upon hours (doctors, exams, procedures, treatment, etc) you learn not to be impatient but instead to look around and really absorb just how incredible an environment this is... psychosocial staff doing the impossible to keep children and their families intact and at times entertained, and of course watching how resilient and full of life children with cancer are under the worst of life's circumstances! They are the amazing ones, along with their parents who support them.

This should make us pause because when we get upset about having to wait at any point during our day, we need to reflect on the countless number of children and families who are waiting in the hospital everyday for treatment, for scan results, or to assist their children as they die.

October 7, 2015

Wednesday, October 7, 2015Tonight's picture was taken on October 16, 2008. Mattie was in the hospital undergoing treatment. However, this photo was taken before any of Mattie's major surgeries. I can tell because he was freely using his right hand and arm! I also can tell that this photo was taken on a Friday. I know this because Chris, the president of the chemistry club at Georgetown, would come to the pediatric units every Friday. Mattie loved when Chris visited. Chris always did an interesting experiment with the kids! That day Chris made big snowballs with water and dry ice. As you can see Mattie was fascinated holding this ice ball in his hand. These visits from volunteers were so crucial and truly helped to break up our long and tedious days in the hospital. Quote of the day: It seems to me that no matter what religion you subscribe to, acts of kindness are the stepping-stones to making the world a better place--because we become better people in it. ~ Jodi Picoult

I want to introduce you to Jenny, the parakeet! Jenny is our visitor to our home!!! She will be staying with us for a week. Our neighbors asked us if we could take care of Jenny while they journey to their home state and have a memorial service and burial for their mom, who died in August. Though I have never cared for a bird in my life, and neither has Peter, we felt compelled to help this family. They have enough on their minds given the loss of their mom and traveling. Jenny and I spent the day together and it has been enlightening. She is relatively quiet, but GOOD GOSH, when she starts chirping, WATCH OUT! When I went downstairs this morning and took the sheet off her cage, she was quiet at first and just looked at me. But within minutes, I came running downstairs because it sounded like a car alarm was going off. That was NO ALARM, that was Jenny! I would never have imagined what a high pitched sound could come out of this little bird! Jenny and I are getting to understand each other. We both seem to respond to sunlight and fresh air. She loves both of them, and appreciates looking out the window with the screen door open, to enjoy the breezes.

I can only imagine if Patches, our calico cat, were alive today to see Jenny! It would be quite a show. Patches chased anything that moved! I also know that Mattie would have gotten a lot of joy out of Jenny! Mattie met our friend's parakeet while he was battling cancer and he got a kick out of her sitting on his hand or shoulder!

October 6, 2015

Tuesday, October 6, 2015 -- Mattie died 316 weeks ago today.Tonight's picture was taken in October of 2008. This was a classic Mattie and Linda photo. Linda was Mattie's child life specialist and they had a special connection and bond. Linda understood that Mattie needed to have responsibility and to feel a part of something. That day a big shipment of items came into the play room. Linda invited Mattie into the mix to help sort and check things out! Of course in the process Mattie came back to his room with a few items! Quote of the day: To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment. ~ Ralph Waldo Emerson

As the calendar has turned over to October, Mattie Miracle is now focused on its fifth annual Candy Drive. In order to get ready for this, I have been reaching out to hospitals and community organizations that assist children with cancer and their families to see whether they will accept candy from us this year. Last year we collected 4000 pounds of candy, and I learned how important it is to know before hand where this candy's destination will be. So far this year we know that our candy will go to:1) MedStar Georgetown University -- to stock our Mattie Miracle Snack/Item Cart. This cart revolves around the inpatient pediatric units three times a week and is greeted with smiles and deep appreciation. In many cases, parents come to the hospital in an emergency situation and do not bring toiletries with them. Which is why our April toiletry drive is crucial, because it helps to stock the cart. However, our candy drive is just as vital, because when stressed out and caring for a child 24 by 7, the number one item families turn to to perk themselves up, is candy! 2) Children's Inn at NIH3) Hospital for Sick Children in DC4) National Children's Medical Center5) Two Ronald McDonald Housesand other organizations! However, the community that enables us to collect all this candy is vast! We get candy from individuals, schools, and businesses in DC, Maryland, and Virginia! In fact the Lab School of Washington, DC just confirmed with me today that they will be collecting candy for us a third year in a row. In addition, we saw this wonderful Arlington Now publication that came out today announcing that Fairlington Dental in Arlington will be collecting candy for us this year. In fact, I have been on the phone today with Fairlington Dental and they hope to donate 300 pounds of candy and are even willing to entertain being a corporate sponsor for our Annual May Walk! Needless to say Fairlington Dental made my day!Article on Fairlington Dental:http://wtop.com/arlnow-com/2015/10/fairlington-dental-practice-to-buy-back-halloween-candy/

October 5, 2015

Monday, October 5, 2015Tonight's picture sent to me by my Facebook friend, Tim Beck. Tim created this composition of Mattie and surprised us with this wonderful gift. Tim produces these gifts for countless families, and as I told him, it is so special to see Mattie through his lens. Tim finds photos of Mattie on the blog and has a way of capturing them in beautiful tributes. Mattie loved leaves and the color orange. So this really resonates with me. In addition, on the easels are two things. One is a photo of Mattie which was taken when he was healthy. He was visiting Roosevelt Island and while on the Island found a crinkly hedge apple. Which intrigued him and it took it home with him. On the other easel was an abstract painting Mattie created in the hospital! Tim was concerned I wouldn't like the painting turned on its side, since I display it vertically in our living room. But as I said to Tim, the beauty of his abstract is that it works anyway you display it!

Quote of the day: Tenderness and kindness are not signs of weakness and despair, but manifestations of strength and resolution. ~ Kahlil Gibran

Today I met a friend in Alexandria and we had lunch near the pier in Old Town. Today was the first sunny day in a week, so it was a special treat. I snapped this photo because a boat by the name of the "Matthew Hayes" was docked. We took Mattie on this boat before and he loved it. Not to mention the fact that Mattie loved that boat because it had the same name as him!

While on the Alexandria pier, I could look across the Potomac to Maryland and see the Capital Wheel in the distance. This is the same Wheel that turned GOLD for childhood cancer awareness month!

On the other side of the pier, I could see the Capitol building in Washington, DC! It is like a bird's eye view of Maryland, Virginia, and DC from this spot!

Mattie would have loved this picture of boats! Mattie's greatest wish was to be the captain of a boat! He always told people that he was saving his money to buy a boat. Many people thought he meant a toy boat, but he actually meant a REAL one!

October 4, 2015

Sunday, October 4, 2015Tonight's picture was taken on October 11, 2008. We had taken Mattie for a walk in our neighborhood. On the way back home, we passed this row of flag poles. As you can see, Mattie hopped up on the base and began running in between the poles. He was having a great time. Whenever Peter and I pass these set of flag poles now, we can't help but remember this snapshot in time. You may also notice that Mattie was carrying something blue in his right hand. It was a toy car! This was not an unusual occurrence for Mattie, he typically transported cars with him no matter where he went. Quote of the day: Everything that slows us down and forces patience, everything that sets us back into the slow circles of nature, is a help. Gardening is an instrument of grace. ~ May SartonIt was another cold, grey, and dreary day in Washington, DC. Yet Peter and I were outside and working on our deck. We finally reassembled the deck after all the construction on the brick wall. I would love to say that the construction project is over, but it isn't! These folks are still outside our deck door, going on week four! At this point I have gotten used to them, their noise, and scaffolding. Rather ironic, since I don't like noise.

Basically the brick wall underwent a major transformation. They had to remove all the old mortar, then replace it, and finally power wash the wall down. Mind you this wall is 30 feet tall. In order for them to do this work, all our planters which were bolted into the wall had to come down. That may not sound so bad, but today we had to drill new holes in the brick and install the planters back on the wall, along with my flower basket hooks. It was a major undertaking.

I am proud to say that despite our plants having to be relocated somewhere else for three weeks, many of them thrived and survived (of course we went to water them while they were away from our deck). Our deck is now back together again and looking very green. What bothers me though is they were working during the last pleasant weeks of the summer, and therefore we did not get to enjoy being outside and sitting on our deck!

Number of Visitors Since October 12th, 2008

The Mattie Miracle Logo!!

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Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Washington Post Article on The Mattie Miracle Cancer Foundation!!

An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.

Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE

Washington Post Article on Reach the Day and Mattie's Blog

In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.

Click HERE for a link to read the article on the Washington Post's web site.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Channel 9 Story

To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE

Mattie's Situation

Mattie Had Bone CancerMattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children. Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.